Service user perspectives about their roles in undergraduate medical training about mental health

Abstract

Background: Current policy states that ‘service users and carers should be involved in planning, providing and evaluating training for all health care professionals. We wished to explore service users’ views regarding undergraduate psychiatry.

Aims: We aimed to explore user perspectives on the specific role of service users in the delivery of teaching psychiatry.

Method: The study design was qualitative and used focus groups. The study took place in a community context with one focus group in Leeds, Leicester, Lincoln and Nottingham. Four focus groups were run with a total of 28 participants (16 women and 12 men, all white). No exclusion criteria were applied. The lead of each group were contacted and they then recruited volunteers from their membership.

Results: The key findings were that participants felt that service users could play important roles in contextualising the part mental health plays in people's lives; dispel myths and fantasies about mental health; offer positive aspects of mental health to counterbalance the media; illustrate diversity within mental health and hope and recovery. Participants also identified the potential challenges to their participation including vulnerabilities especially at critical points in people's illnesses; perceived credibility – lack of support from some involved in academic roles; lack of appropriate training and support and issues of power and lack of genuine partnership in the planning and delivery of teaching. They were favourable about the development of guidelines as long as they involved a range of perspectives.

Conclusions: Service users present a range of ways in which they could be involved to enhance the educational experience of medical students in psychiatry.

Introduction

The National Service Framework for Mental Health (DOH 1999) – reflecting the recommendations of ‘pulling together’ (Sainsbury Centre for Mental Health 1997) states that ‘service users and carers’ should be involved in planning, providing and evaluating training for all health care professionals (DOH 1999). With the establishment in 2002 of the Commission for Patient and Public Involvement in Health (DOH 2005) fertile ground has been created to support this.

Service users and carers have increasing input into health and social care education at a range of levels: in nursing (Felton & Stickley 1994; Forrest et al. 1998; Frisby 2001; Langton et al. 2003), social work (Levin 2004), clinical psychology (Harper et al. 2005) and medical training (Butterworth & Livingston 1999; Wykurz & Kelly 2002; Owen & Reay 2004). Professional and regulatory bodies have begun to set standards in this area, with user and carer involvement in postgraduate education now a requirement of the Royal College of Psychiatrists (Fadden et al. 2005) and recommended in the recent Chief Nursing Officer's Review of Mental Health Nursing (DOH 2006). There is, moreover, growing recognition of the spectrum of ways in which service users and carers can contribute (Tew et al. 2004). Concern remains, however, that service user involvement can be token, lack clarity of purpose and result in a poor experience all round (Felton et al. 1994; Ahuja & Williams 2005; O'Keefe & Britten 2005).

Table

Practice points
•Service users may have several roles in teaching medical students about mental health.
•Service users will require some support and perhaps also some training to fulfil these roles.
•Serious thought should be given as to when service users are employed to deliver teaching.
•There should be clarity about exactly why service users are being asked to deliver teaching.

To date, there have been no data available regarding user views of the specific purpose of services users as potential contributors to undergraduate psychiatry curricula in medical schools. The current study explored service user perspectives on psychiatry curricula and specifically we aimed to explore user perspectives on:

• what should be taught about psychiatry to medical undergraduates;

• how psychiatry should be taught;

• the specific role of service users in the delivery of teaching psychiatry.

In this paper we report solely on the third aim as considerable data was generated.

Method

Following discussion with user representatives and researchers already involved in such research, the method used to elicit service user perspectives was focus groups.

Focus group schedule development

This schedule was developed by modification of semi-structured interviews used in similar work elsewhere (Dogra 2004). The original interview schedule had been circulated to the Association of University Teachers in Psychiatry (AUTP) for comment on appropriateness. The schedule was modified in consultation with the project lead for the national Mental Health in Higher Education Project (MHHE). Four service user groups were identified through the MHHE and personal contacts. The contact person for each of these groups was identified as a user lead. The roles of the contact persons were locally variable but for all they included representing the service user perspective (on behalf of their group) to external agencies. User leads were also sent the schedule ahead of the focus group and invited to suggest changes. Box 1 outlines the domains covered by the schedule.

Box 1 Domains covered by the focus groups

• What should be taught about psychiatry to medical undergraduates.

• Views on the teaching: what teaching methods should be used, who should teach psychiatry and what is, or could be, the role of users and carers, how much time should be spent on psychiatry, when and where should it be taught (i.e. in medical schools; on placements; in community settings), and what is the role of subspecialties e.g. child and adolescent psychiatry.

• The potential benefits and difficulties of teaching mental health issues: availability of tutors/placements/lack of resources, suggestions on how difficulties can be overcome, what particular difficulties might be encountered in involving users and carers in the teaching of undergraduate psychiatry.

• Changes in psychiatry teaching over recent years; views on such changes, changes you would like to see.

• Assessment: views on experience in assessment, views on methods of assessment currently used for psychiatry, the role of services users in assessment.

• Student recruitment and selection: qualities you think that medical schools should be looking for at interview, roles for service users and means of involvement.

• Guidelines to medical schools on teaching mental health/psychiatry: views on the introduction of guidelines and the role service users might play in their development.

• The final issue for the focus group was to try and identify three key learning outcomes for medical schools.

Procedure

There were four focus groups identified as discussed above. All the forums saw collaboration with research as one aspect of their role. As participants were being interviewed as members of the group and not as patients, ethical approval was not required, although the project was discussed with the research office. Each group leader was asked to identify 6–8 participants who would be willing to participate. No specific exclusion or inclusion criteria were given. The service user lead issued an invitation to their members. The date, time and health status influenced those who eventually participated. All the focus groups took place in locations familiar to the service user groups and lasted between 90–120 minutes. The same moderator (ND) oversaw all focus groups. ND is an experienced clinical psychiatrist and qualitative researcher with previous experience of focus groups and educational research. Whilst there was a focus group schedule, the participants were encouraged to raise and discuss their own ideas pertaining to key areas under exploration. Some of the group members were familiar with each other and used to discussion forums. The moderator was able to begin with more general questions and then narrow them down depending on the responses. There was no attempt to achieve consensus as we were interested in exploring the range of perspectives.

Participants were paid travel expenses and a standard fee. The sessions were audiotaped, with consent, and the tapes transcribed.

Sample

All four focus group leads who were contacted agreed to participate. Over all the groups, the total sample consisted of 16 men and 12 women. All were white adults with experience of adult mental health services; two also had experience of services for older people and two women had used mental health services as children. There was one carer who cared for her husband who had mental health problems. We did not collect any demographic data on the respondents and nor did we ask about their diagnosis. We did not consider this information essential to the research. The respondents had a range of mental health diagnosis as evidenced through the transcripts and all were generally well when they participated. In one group, a young man with substance misuse problems left the focus group as he felt unable to continue.

Analysis

All the focus group tapes were transcribed verbatim. Thematic analysis was undertaken (Joffe & Yardley 2004). ND and RE identified themes independently before discussion to reach agreement on those of relevance to the research question. This helped to ensure reliability. Themes were compared across scripts to develop conceptual ideas beyond description, and these were then categorised. We did nor undertake formal respondent validation (Mays and Pope 2000). However, the participants had an opportunity to review the transcripts before analysis began and the final report before it was accepted as a final version. They also had the opportunity to attend a meeting at where findings were disseminated and an opportunity to view the presentation.

Findings

All participants welcomed the opportunity to participate in the research and many viewed their input as valued, believing the process to be progressive:

I think training has got better and the fact that we're having this meeting shows that things are moving.

Teaching psychiatry: Service users’ role, and the value of their contribution

Contextualizing individuals who have mental health problems

Data from the focus groups suggest a range of ways in which service users can enhance the teaching of psychiatry.

Direct involvement in teaching can emphasise the need for humanity, helping students to see the ‘whole person’, as opposed to someone defined by their diagnosis.

One of the important things about the actual contact with services users is seeing things within the context of the person's life, the difficulties that the person might have faced in actually getting to the surgery and what, from the medical point of view, is an illness – what that illness means in the context of somebody's life.

Service user involvement can emphasise positive aspects of mental health, counterbalancing negative media constructions and dispelling myths, fears and fantasies about mental ill-health. Such engagement can demonstrate actively that:

People can function and recover and, you know, gain meaningful employment and all those things … . That is so important and it really does dispel some of the myths and the stigmatising attitudes that people might normally carry with them from the media.

The engagement of service users as active partners in the learning process can be a means to illustrate the importance of hope and recovery; of value even at later stages in programmes where patient contact in clinical contexts may be a significant element of training.

Involving service users in teaching can help students to recognise diversity: the range of ways in which people experience mental wellbeing and ill-health, and the diversity that can exist within a single diagnostic category.

It's far too easy for some people to, forget, how different every case is and the same illness will apply to different people in many different ways and rather than just say ‘That's A, therefore I’ll give them B’, I mean, they’ve got to really find out what, what's specific about them.

Service user involvement can, moreover, reinforce students’ sense of the expertise they bring through their own experience, or that of friends or members of their family. One group member spoke about how their involvement acted as a catalyst for mutual sharing of experience:

Well a couple of them actually went on to talk about their own experiences using mental health services and I think that's quite significant in terms of stigma and the culture within medicine.

Other contributions

The focus groups revealed that service users can be involved in teaching – not only through sharing their own experience directly, for example, but through engagement in the writing of scenarios and development of simulated patient roles:

We found out through our experience that scenarios written and developed by mental health users or other patients that have been involved always seemed to be a lot more powerful than scenarios written by mental health workers.

Focus group participants were clear they had a useful role to play also in the planning of programme content and structures. Most participants were positive about the development of ‘guidelines’ – suggesting to individual programmes what should be taught to undergraduate medical students about mental health/psychiatry – and felt that service users (and not only those with involvement in specialist services) could have a useful role to play.

It's always good to sort of share information and look at what's going on and what works and what doesn’t and what can be improved upon … so I think if it gets a dialogue going about the whole issue of mental health that, for starters, is fantastic.

Assessment of students’ learning was seen as another, less developed but potentially fruitful, area for involvement. Service users interviewed were aware of parallels with new models in use in clinical practice such as three hundred and sixty degree assessments.

Recruitment and selection of medical students was of particular interest to focus group participants and in different ways they queried the criteria sought:

… perhaps we've got to the point now where academic excellence is pushing out some of these other qualities that make a good doctor?

There was recognition that service users might have a useful role to play in the recruitment and selection processes themselves, though as yet little experience in this area.

Involving service users – potential challenges

Whilst enthusiastic about the contribution that they have to make, focus group participants did not underestimate the real challenges and barriers to be overcome.

Service users involved in training and education can be vulnerable. They may need support to make choices about how much information, and which aspects of their experience, they elect to share.

Resistance from other teachers may be an issue. Service users involved in teaching may be challenged about their perceived lack of expertise and educational credibility:

I don't think it's an issue just for medical schools, I think it's probably even more so amongst nursing or social work, there's a kind of credibility issue. I've certainly had it suggested by lecturers in nursing saying, I spent X number of years doing my PhD and my blah, blah, blah, who are you to come along and start doing teaching?

Conversely, there can be a risk associated with a simple substitution of the notion of the ‘expert professional’ with that of ‘expert patient’. There was recognition, in the focus groups, of a complex balance to be struck:

We should have more than a token role. But, obviously we're not experts, so …, it should be a collaborative effort with lots of different people.

In discussion about barriers, several people made reference to the need for greater understanding on the part of teaching staff, both about the potential barriers to involvement (e.g. potential loss of financial and disability benefits) and how these might be overcome such as through team work and support.

Well maybe they [in a group] can support each other. It might be that sometimes somebody's meant to come along and talk on their own and they’re actually poorly.

An emphasis on the need for careful preparation, and induction into the programme to which they would contribute, was balanced by an awareness of the risks of becoming over-identified with existing structures and systems. There was recognition, amongst service users, that part of their strength may lie in their lack of familiarity with the structures and processes of medical training. However, the question raised is which areas they can be effective teachers in this context.

Discussion and conclusion

Stigma was an issue raised by those interviewed, and it is clear that medical students need to acquire an understanding of stigma and discrimination from an early stage of training. This is of importance in enabling professionals such as GPs and others to recognise their own prejudices and misconceptions about mental ill-health. Experiential approaches to learning may be of use in helping to develop the humility that service users see as a prerequisite for effective medical practice. Echoing comments made in the focus group, a report by the Royal College of Psychiatrists (2001) stresses the need for medical students to ‘develop insight into their temperaments such that they can guard against any tendency to reinforce patients’ fears of personal disclosures and experience of stigmatization’ and advocates that medical schools ‘use input from people with mental illness’ (p. 27). Having service users as active members in the teaching team can help with this.

Patient choice is a current issue of concern. Another issue arising from the focus groups is that of how undergraduate students develop an understanding of difference and diversity in respect of service users’ needs. One person interviewed expressed their sense of outrage on being asked by their doctor how long their sick note should be for, clearly feeling strongly that the doctor should have known. For every person who feels that way, there will be another extremely pleased to have been asked! User involvement in communication skills training and the development of simulated patient roles can be of value here.

It is arguable that although patients have not always formally identified as teachers, they have always had such a role. Clinical teachers often expect students to use the time with service users to understand their perspectives. Identifying service users as teachers should reduce the likelihood that students will not consider their perspectives. However, the reality is that as everyone else, service users may have their own agendas which may or may not fit with the learning outcomes as required by the General Medical Council (GMC 2003). Respondents alluded to the balance that needs to be struck in presenting their perspectives against a professionalized version of the service user perspective. This indicates that careful thought is required when service users are involved in education and there must be clarity about the purpose of their involvement.

A number of good practice issues arose in discussion with these focus groups of service users if they are to serve as teachers – training and support are two examples. There has, to date, been relatively little interdisciplinary debate about how user and carer involvement in education and training can best be approached (Anderson 2003). Yet there is so much to learn from experience to date, and much of that learning is held within the groups of service users who have been developing their expertise as educators and tutors. It is important that medical schools seeking to find new ways of involving patients in teaching students draw not only on other examples within undergraduate medicine but also on the broader cross-disciplinary knowledge base (Repper & Breeze 2004; Tew et al. 2004).

Limitations of the study

There was no representation of any minority ethnic groups in any of the focus groups. It is possible that, had there been such involvement, the specific issue of cultural competence might have been raised. Had time and resources permitted, it would have been useful run parallel focus groups with carers. The sample size is small but indicates that the service user role in enhancing teaching and learning about psychiatry warrants further exploration. More in-depth consultation with those individuals and groups who have developed experience and expertise in this area would be helpful. Unfortunately much of the literature and policies (discussed in the introduction) refers to service users and carers and it is often ignored that the two groups may have very different needs and perspectives. At times there may be a conflict of interest for the two parties especially in mental health. There is a need, across the disciplines, to further evaluate the impact of user involvement in teaching on students’ learning and, ultimately, on practice. It is hoped that recent moves to increase user and carer involvement in post-registration training (Fadden et al. 2005) will provide some helpful insights. However, a key implication is to ensure that service users are involved for a clear and agreed purpose and their involvement is judicious rather than tokenistic.

Conclusion

It is clear from this research that service users feel that they can usefully contribute to undergraduate medical education in psychiatry. At a local level, service user focus groups may prove one way forward in enhancing programme planning. However, there is a need to carefully consider the benefits and potential pitfalls if service user involvement is going to fulfil an educational role.

Competing interest

There are no competing interests for any of the authors.

Acknowledgements

We would like to thank the Medicine, Dentistry and Veterinary Medicine subject centre of the Higher Education Academy for support in funding the focus groups. All the authors are independent from the funding body. We would also like to thank all the participants for their active involvement and hospitality. Needless to say, without their support we would not have been able to undertake this work. The Making Waves organisation wished for their organization to be acknowledged by name.

In the paper, all personal identifiers have been removed or disguised so the persons described are not identifiable and cannot be identified through the information given.

Additional information

Notes on contributors

Nisha Dogra

NISHA DOGRA, BM DCH, MRC Psych, MA, PhD is a Senior Lecturer in Child and Adolescent Psychiatry for the Greenwood Institute of Child Health at the University of Leicester.

Jill Anderson

JILL ANDERSON is a Senior Project Development Officer for Mental Health in Higher Education at the University of Lancaster.

Ruth Edwards

RUTH EDWARDS, BSc is Research Associate at Leicester University.

Sue Cavendish

Dr SUSAN CAVENDISH, BA, PhD is a Quality Management, Regulation and Capacity Advisor at the LNR Healthcare Workforce Deanery.